Constant, crippling nausea: gastroparesis

[Nw6London]

Hi all, I have Dssc and medicated x2 twice daily mycophenolate which I've been on for about a year. My symptoms are generally under control after I began Mycophenolate (skin thickening has reverted, raynauds still had but thankfully not worse, all have rheumatoid arthritis, which limits the dexterity of my hands, but not severe). Generally I'm quite able.

Before Mycophenolate, I was on Hydroxychloroquine and this limited my appetite and I lost A LOT of weight (I didn't have to lose). Consequently now, I am still quite slim. Recently, I have started to experience really intense nausea and lack of appetite. The nausea takes over - uncontrollably. It feels like morning sickness. So unpleasant, the only thing that helps is lying down and being still.

Now I'm digging into journals and research papers. I know I don't have GERD, but stumbled upon gastroparesis and its link to CTD. Also seems to explain my newfound lack of appetite these days. Any experience in this area please?

Thanks so much!

[OldTed60]

Hi there. Yes I have Gastroparesis. It was diagnosed mid pandemic when I was still struggling to get my SSc confirmed locally although it had been diagnosed further afield by a Sjögren’s/ SSc expert in 2019. I was put on Mycophenolate in 2020 along with Iloprost having tried many other treatments over the years when previously diagnosed with RA. Last year SSc was confirmed by another expert and is now accepted locally as well. I had a gastric emptying scan and this confirmed severe gastroparesis. I wasn’t surprised as I felt awful and had been having burning pain above my stomach for a few years, diagnosed previously as gastritis with IBS-c relating to Sjögren’s.

I’m doing okay now with upper GI I think although awaiting “urgent” colostomy for slow colon transit - damaged recto sigmoid, probable SIBO and treated for the GI Dysmotility with Domperidone, Rifaxamin, Esomeprazole, Picolax and Linaclotide. My weight used to be obese at 13.7 stone and now hovers at 8 but I live on low fodmap/ Gastroparesis restricted soft/ liquid diet and boost my calorie intake with a daily Ensure Plus in decaf coffee or tea. I’m under dietician for the Ensure. She’d like me to have NJ feed but I politely decline as don’t want anything up my Sjogren’s nose. I have maintained my weight for a while now and I don’t think 8 stone is too bad considering I’m only 5’2. I rarely vomit but I do feel nauseous 24/7 most of the time. I have silent reflux with hiatus hernia.

Hope all this background and telling you about my related treatments helps a bit. I too have found Mycophenolate a game changer for the rest xx

[Tiggywoos in reply to OldTed60]

oldTed I’m so sorry you feel so sick all of the time 😟. You’re such a trouper on here and such a good contributor . I love your posts and always re read them . Just wanted to send you a hug as nausea is the worst xxxx

[OldTed60 in reply to Tiggywoos]

Thanks so much. I think any symptom that’s constant becomes our normal after a while so I only know I’m nauseous when I have a brief time off on IV Cyclizine as pre-med to Iloprost once a month. Otherwise it is what it is. Sometimes when it’s extra bad I try to make myself sick for relief but I don’t have much gag reflex anymore so that’s not usually effective and means my face gets covered in tiny petechiae from retching - ugh! So I now just nibble anti nausea foods such as pure smooth peanut butter and Vegemite or pop chip baked crisps or I suck a ginger sweetie or sip a warm ginger cordial xx

[Clangerscat]

Hi NW6, I also had crippling nausea but mine was found to be GAVE which is also connected to SSc. This also causes anemia which in my case was severe so you would probably know if you had it. Either way it is awful to feel like it all the time and you need investigations to find the cause. In the meantime I found grazing helped me and had very small meals often. I was also prescribed stemetil which helped with the worst of it. Do you ever get dizzy spells? I’m just wondering as lying down helps wether it could be something connected with your inner ear like vertigo. Hope you get some help soon.

[Lupiknits]

I have gastrointestinal problems related to systemic sclerosis. They began with severe acid reflux which caused me to lose a lot of weight. This was before I was referred to rheumatology but it seems it marked the start of the process.

I’m on hydroxy and mycophenolate, with monthly Iloprost for Raynaud’s. My consultant is planning Rituximab next. I’m also to have another colonoscopy to check for inflammation. While not tested for gastroparesis, it’s taken as a given that’s a problem and I’m also prescribed monthly Rifaximin for SIBO.

In general, my main difficulty is with swallowing, getting food into my stomach then hoping it moves on. I’m prescribed nutritional supplements to try and get some weight on but really have a poor appetite. I can’t say I feel nauseous, it’s more that I don’t relish food as I once did.

I think the link between scleroderma and gastrointestinal disorders can be overlooked. My experiences are very similar to OldTed’s .

[Poshcards]

for nausea I swear by 'Queasy Drops' sour cherry flavour for me personally xx